Child Support

Of course, most of us don't love it. We like our plans. We like being in control, despite the fact that this is an illusion.

While I believe that being prepared and making plans are important, being unprepared—in the sense of being open and receptive—is also a skill worth cultivating.

I don't need to make this point to those in special needs families, because you already know all about this. You know how important it is to take a deep breath and let go when things get wild and crazy.

This being the case, it is you who have been my greatest teachers in the art of loosening up. My relationship with my brother Willie and with others in the L'Arche[3] community have showed me, time and time again, that adhering to a rigid sense of how things ought to be leads to missing out on the strange, true, chaotic wonder of what is.

In short, it is because of those relationships that I was able to go with the flow at the Lollipop Kids Foundation[4]Family Support Day last Saturday. As I wrote in last week's column, I'd volunteered to lead fellow siblings[5] in a Sibling Support group. I'd prepared a mini-curriculum, complete with questions, activities, and time for reflection.

However, I'd prepared with the (incorrect) assumption that the siblings would be teenagers, or pre-teens at least. Yet as I enjoyed meeting families during lunch, I realized that nearly all of the siblings present were 10 years old or younger. In fact, one sibling was only 3 years old!

Oddly enough, I didn't feel panic. I'd resolved to show up and be present for whomever came to the event, and if that meant throwing my plans out the window, so be it.

I will always be glad that I did choose to show up. Though there was a fair amount of chaos—the 3-year-old's sole mission was to escape from the supervision of his (very patient) 14-year-old brother—there were also moments of strong connection. Though we took breaks to tangle ourselves up in a “Human Knot” and listen to Taylor Swift, we did talk about the realities of being a special-needs sibling.

The kids shared their experiences with straightforward transparency: How cool it was that their special-needs siblings had unique gifts, how awesome it was to know just how to make their siblings smile. They also shared the harder things: How frustrating it was when one parent always had to stay with their sibling, how self-conscious they felt when their sibling did something strange in public.

When I shared stories from my life, they reciprocated immediately. When I spoke about how frightening it was when my brother got out-of-control angry and punched holes through walls, another girl spoke up, saying that her dad had punched a hole in a wall after a frustrating time with her sibling. We met each other's gaze, and something of the isolation every sibling experiences healed over for both of us. As I listened to their stories—so like my own—I felt tears prickle in my eyes.

Despite the age difference, I felt akin to these kids. One young girl in particular seemed a kindred spirit. She was incredibly smart, perceptive, and kind; her presence was an anchor in the group. Because of her, I felt brave enough to share a little bit from my book, “Love's Subversive Stance[6].” Though I didn't read a story aloud like I'd planned, the kids loved looking at pictures of me and Willie when we were younger.

As the event drew to a close, my kindred spirit approached me, a copy of my book in hand. With a lump in my throat, I wrote a message for her. Parents milled around me; many were wiping tears from their faces, thanking the director and the other volunteers. And in the midst of it all, I was putting pen to paper, thinking once again how leaving normal had brought me to a beautiful place.